Mayo Clinic is as impressive as most of us expect it to be. I am now an established Mayo patient and I can return any time for assessment, treatment options and trials.  Dr. Aaron Mansfield is an excellent oncologist who spent considerable time with us answering questions and reviewing research.

BEST NEWS - All doctors expressed enthusiasm regarding the discovery that I have an EGFR mutation expressed in the cancer. I was switched immediately to a targeted oral chemotherapy called Tarceva (which was fully covered by my insurance - Thank You Dana). Tarceva is expected to reduce tumor size "significantly" and stop metastatic growth for about 1 year. Some patients can be kept on Tarceva for several years before moving to another targeted drug. Since EGFR is a known mutation, new drugs to prevent regrowth are already being tested. Still, there is a small chance that Tarceva won't work for me, or that side-effects will be intolerable.  In 6 weeks I have a CT scan at the U of M to measure the effect of the drug.

I AM AFRAID TO BE EXCITED. It's as if my life was handed back... tentatively. How do I live this uncertain edge? Will I feel as alive as before? Could I possibly feel good enough, long enough, too forget that I am sick?  Could I return to ignorance...or... a thoughtfully sober zest for renewed life! Am I bargaining here? There were so many thoughts and prayers sent this way, could this be my miracle? With too many unknowns I remain cautious, but my feet want to dance.

I am already dancing to THIS certainty:
- No more IV Chemo sessions
- No more fatigue and chemo "blah"
- Fewer medical appointments and procedures
- Having more energy to connect with those around me.
- Taking a break from the Keto diet and returning to fresh veggies

Craig and I talked about a future today, plans that started to reach beyond summer... 

I learned today that I tested positive for EGFR (Epidermal Growth Factor Receptor) a mutation in the cancer that explains why my cancer has been so aggressive. Good news is that there is targeted chemotherapy for EGFR mutated cancer (common in non-smokers). We should have known this weeks ago (thus the "fired" oncologist) but hopefully I can still enjoy full benefit from treatment. EGFR treatment is a pill, Tarceva, an oral chemotherapy that is expected to slow or stop cancer growth for 1 year. I still need to manage side-effects but fewer side-effects than IV chemotherapy...maybe I will feel more ALIVE on a daily basis.

I am afraid to grab on to it, but just maybe I have gained a some future, some hope, some LIFE! This is mind blowing, I am hesitant to get excited until I get a full review from Mayo Clinic tomorrow. I also have been told that insurance may refuse to pay for the drug, which is incredibly expensive.

Tarceva - read more

In my last blog I wrote:

 "Living dying means that you are in a different world, separate from everyone else...everyone."

I almost didn't write those words, because I thought the message may be too "dark" and "difficult". But I was wrong. I have received some of the most meaningful emails in response to that post. Many people understand feeling separate and alone. And I am honored to finally understand how my patients felt inside. Here is a response I received that captures it completely:

"You are physically / mentally now where many of us emotionally start: dying inside and alone, isolated by the fact we can't talk about it all the time because people have lives. Yes, they care, but there's nothing they can do. Either we'll come out of the depression or we won't."


Maybe to "Woo Hoo" for some readers, but here it comes again for me, I've always believed we are in essence "the same person", differences being a separating illusion.

Dying is not simply a word, it is a process that is infinitely important and emotionally exhausting. Choosing to live and log the dying process, eyes wide open, is laying claim to a compelling adventure. It starts with the shock that in one medical appointment your health is gone forever. Next, loss washes over you in endless waves. Your life framework starts to abandon you; Job, plans and dreams, strength and body integrity, relationship foundation, energy, breath, eye sight, connection with others all shift. Living dying means that you are in a different world, separate from everyone else...everyone. I have struggled with wanting my most intimate relationships to stay close, but the "living" struggle to talk words of progressive dying and can't stay long - because they have jobs, kids, vacations, appointments ... pressing life to tend to. I have received incredible love and support, and I am so grateful for this, but I believe the emotional departing and solo walk of dying is done mostly alone. Others can not die with me, what a horrible thought, transitioning skillfully must be the "sweet spot". I hope to become expert at staying connected and coming apart at the same time ... the magic of goodbyes. 

** Please don't panic and think that my death is imminent. But it is important to understand that to the medical world my condition is "progressive" and "terminal", time is the only variable discussed. We hear of "miracles" and people tell me personal miracle stories everyday, how much is emotion and how much science is hard to determine. For me, I strive to understand the science and make the wisest choices I can. If a miracle occurs, I will accept it. Personally, I cannot ignore or discount the medical and scientific world regarding my condition, this would feel like fear and denial, creating a false world which leaves me vulnerable and missing out on real life ... which is Now!

Sorry for not posting , I've gotten feedback that I should post more regularly.

Things have been exhausting here. I have officially "fired" my oncologist and start Monday with a highly regarded Lung Oncologist, Dr. Naomi Fujioka. It was literally a fight, with some high level strings pulled, to get on her calendar. I also have an appointment at Mayo Clinic on April 29 & 30. Mayo will assess my treatment so far and discuss options with me.

I am day two after my second chemotherapy treatment and I am wiped. My energy to interact with others or even get out of the house is pretty low. Craig is back and will join me at appointments to help make some of the now critical decisons, and Brigit is my research assistant helping determine options and assess drugs. Many of the new drugs are marginally useful, extending life only 2 months more than chemo and with vicious side effects.

Most important to me is quality of life, and my best chance at quality of life is NOW. Due to the poor prognosis with chemo, and the  blow chemo delivers to quality of life, I am leaning toward stopping chemotherapy. I will listen to Mayo, I will discuss and bargain for best solutions, but QUALITY not LENGTH of life will be my focus. If my biopsy shows a mutation, then my treatment will switch to pills and provide a better prognosis. I am also hoping to gain access to PD1 trial drugs by being plugged in at Mayo, the drug only works for 1 in 3 but when it works, patient lifespan is expanded by multiple years.

More Options Explored:

I remain on a Ketogenic diet, fasting during chemo, hoping to slow the cancer by removing sugar.

I cannot use hyperbaric oxygen due to the chemo agent  CarboPlatin. Perhaps in the future if I discontinue this chemo drug

Research from Harvard shows a very strong response in Metastatic NSCLC Adnocarcinoma (what I have) in response to Delta-9 THC. This research is still in animals with some human trials in Spain.  I am looking into cannabis options and a few synthetic THC drugs that are already on the market. Unfortunately, I just left a medical marijuana state.

Thank you everyone for the thoughts and prayers, flowers, gifts and supportive email. I apologize if I do not always respond, I think all of my energy has gone into trying to find a path through this grim medical grind, while still grabbing on to the sparkly moments. Brigit and I have laughed a lot, she threatens to "out" me on the blog, saying my behavior is ridiculous and it would shatter my solid blog image. I think, if you know me, you've likely been witness to my sillyness. We began planning my O-Bitch-uarie last night and discussed having a funeral that I can attend, I guess it's called a Celebration of Life. We have had fun with our twisted think-tank dinners, gathering friends in our tiny apartment, using spoons because we don't have forks, and laughing a lot. As always, Life is a fond adventure.

M-I-SS--I-SS--I-PP-I

Twenty years ago, I had my kids recite that Mississippi spelling rhyme, every time we crossed this bridge (Franklin Bridge).

Day 10 (after chemo) I am feeling much more "Alive". The morning was bright and active, not the "slog" I've had the past week. I am sleeping better, coughing less. Our 10" of April 4 snow is almost melted away. I walked over 2 miles today (without losing breath!) and had to shed my coat to the balmy 48 degree day. It is tender sweet to be close to SO many dear friends. I bumped into an old friend walking home and had a lovely conversation. He is an author and we planned for Spring and Summer talks on the porch to discuss my writing and publishing project.

HAPPY BIRTHDAY RUTH! My friend, landlord and "Mayor" in these parts. We had a wonderful Birthday celebration upstairs with other tenants and 10+ friends.

It remains "bizarre" to feel more and more alive, yet know that I am in essence "dying". PET scan shows that I have many tumors throughout my lungs, between lungs, on the thyroid, in neck and NEW NEWS a spot on my liver. Hottest spots are large tumor in upper right lung, liver and neck / mammary glands. I will continue to live BIG, what else to do, until I can no longer. LIfe is good...really!

Checking in on day 7 after chemo. Today I walked in the warming MN sun to do my banking and have breakfast...just like a normal person!

My current reality is that I feel fairly good but I cannot get through a day, or even an hour, without struggling for breath and "hacking". I wrote my Last Will and Healthcare Directive yesterday, and applied for Social Security Disability. I cried with my daughter, and then again with Craig as we reviewed these documents.

Being in the world between living and dying, is a very strange balance. I look at others who are unhealthy in how they eat, drink or behave and wonder "would I trade places, if it meant I could relinquish my death sentence?" I don't think so. I unexpectedly enjoy an immense amount of contentment and satisfaction knowing that I did not squander my life to hedonistic, material pursuits. I adventured and invested in people, both friends and shared heart journey with my clients. So much indescribable meaning is gained when two human beings sit in simple non-judgmental  understanding. The love and support of those reaching out to me has been phenomenal.  Still, without a single email or phone call, fulfillment in a life well lived remains a stable constant.